The story of Emma's journey of neurofibromatosis brain tumors and blindness.

Friday, August 14, 2015

Take Back My Life!

NO MORE CHEMO!

There are many details to this story, some of which I will not share until I have sought advice. However, I can tell you that we are out of chemo for now! Standford has two options for Emma, the tumor board will discuss her case Monday and decide then contact us Tuesday with the plan. All medical decisions are made by a consensus of several doctors. Makes sense to me! That makes it impossible for one doctor to push an agenda.

Her MRI from Tuesday showed no tumor growth (good) but also no positive effects from the chemo at all, in fact, her tumor has some enhancement. Clearly the chemo is not working. Humm...what have I been saying for months?

Best Case Senario: Emma will get three months off all meds and have another MRI to determine what her tumor does on no medication. It is possible that it will not grow at all.

Worst Case Scenario: Standford has a three trials open to NF1 pediatric patients that Emma is qualified to join. The one that the new oncology guru would like to pursue is a nonchemo drug that is given at home in pill form twice a day. We would go in to clinic once a month for a check up and blood draw. It will not effect her immunity, make her lose her hair, or any of the other nasty things that chemo did to us. The only side effect seems to be some leg swelling. A much better alternative to chemo!

So as you can see even worst case is a much better quality of life for Emma and for us all! I finally feel like I can take a seat, trust a team, and go along for the ride. Oh and a huge thank you to Standford for recognizing that hospitals are a tiring and scary place to be. From free valet parking to free Starbucks coffee in the Oncology waiting room, to running on time, to a kid friendly things everywhere, this place rocks. Let's just say they had interactive touch screens and a huge train (HUGE) for the kids to play with while they wait. They also have separate well and sick waiting rooms!

So the future, what does it hold? Well GOOD NEWS, Emma will not die from this! She will need meds and tests and monitoring and possibly more surgery but she will not die. In fact, she has been downgraded! Her type of tumor tends to continue growing until puberty so we have many years ahead of maintaining a proper size. If it grows too much it can make her blind in her only seeing eye or cause hormone issues. Next she visits the surgeon to monitor her for possible debulking and the pediatric neuro ophthalmologist to do an in-depth eye exam. So at least two more appointments this month even if we get a break from meds.

I am still in shock...no more chemo looming over our lives? No more ER trips or tossing our cookies? So what will life look like out side the glass? Ballet lessons, Sunday School, Homeschool, spontaneous day trips to the beach, ice cream, laughter, happiness. Time to reclaim our childhood. Time to lick our wounds and heal from this emotional Hell. Time to create some change in the medical practice that left us in the lurch. Time to run, run free. Time to raise money for other kids who need our help. Time to LIVE.

Like I said before, I will get more details later. For now this is what I can share and it is finally some good news for us all!